What do you think about genetically engineered people?

As first reported by Antonio Regalado at MIT Technology Review, Chinese scientist He Jiankui claims to have made the first crispr-edited babies. “Two beautiful little Chinese girls, Lulu and Nana, came crying into the world as healthy as any other babies a few weeks ago,” He said in the first of five videos, posted yesterday to YouTube. “The girls are home now with their mom, Grace, and dad, Mark.” The claim has yet to be formally verified, but if true, it represents a landmark in the continuing ethical and scientific debate around gene-editing.

Late last year, He reportedly enrolled seven couples in a clinical trial, and used their eggs and sperm to create embryos through in vitro fertilization. His team then used crispr to deactivate a single gene called CCR5 in the embryos, six of which they then implanted into mothers. CCR5 is a protein that the HIV virus uses to gain entry into human cells; by deactivating it, the team could theoretically reduce the risk of infection. Indeed, the fathers in all eight couples were HIV-positive.

Whether the experiment was successful or not, it’s intensely controversial. Scientists have already begun using crispr and other gene-editing technologies to alter human cells, in attempts to treat cancers, genetic disorders, and more. But in these cases, the affected cells stay within a person’s body. Editing an embryo is very different: It changes every cell in the body of the resulting person, including the sperm or eggs that would pass those changes to future generations. Such work is banned in many European countries, and prohibited in the United States. “I understand my work will be controversial but I believe families need this technology and I’m willing to take the criticism for them,” He said.

Replies

I can't imagine deciding to use my children as test subjects for this type of technology. Using this technology on other species has already demonstrated that other, unintended changes, can happen. Nobody really knows what the outcome will be for these girls.

If it was guaranteed to work I would use it to have kids without my husbands auto-immune issue. But I can't imagine using my children as test bunnies for it and have them willingly with an HIV positive man.

If it was guaranteed to work I would use it to have kids without my husbands auto-immune issue. But I can't imagine using my children as test bunnies for it and have them willingly with an HIV positive man.

For what it's worth, there are ways in which cis-men with HIV can father biological children without transmitting HIV to his partner or future child(ren). Here's a lit review about sperm washing published on the NIH's website.

While, in theory, it is technology that could rid the world of a whole host of genetic diseases....

It's such a slippery slope...we don't know the long-term effects of these modifications. It has the potential to be used for the creation of "designer babies". In case you want a blond-haired, blue-eyed little girl.

I wonder if the same people who buy non-GMO popcorn and such would be okay with a genetically modified baby?

But what about the greater good? It's the "gotta break a few eggs it you want to make a cake" cliche, right? If a few/several/lots of test kids have to fail in order to produce generations of people that are immune to cancer, epilepsy, Parkinson's, Alzheimer's, etc... is it worth it?

If it was guaranteed to work I would use it to have kids without my husbands auto-immune issue. But I can't imagine using my children as test bunnies for it and have them willingly with an HIV positive man.

For what it's worth, there are ways in which cis-men with HIV can father biological children without transmitting HIV to his partner or future child(ren). Here's a lit review about sperm washing published on the NIH's website.

And a similar mutation already exists in some people, so that was the basis for their targeting that specific gene. Evidence thus far indicates people (about 2% of the population apparently) lacking CCR5 function normally.

It is really hard to project the complete effects of gene editing though. As much as we have figured out there is still so much more we don't know.

I can't imagine deciding to use my children as test subjects for this type of technology. Using this technology on other species has already demonstrated that other, unintended changes, can happen. Nobody really knows what the outcome will be for these girls.

This for sure, as much as we have figured out there is so much more we don't know. It's impossible to accurately project the complete effects of gene editing. Results in cells don't necessarily equate to results in mice which don't necessarily equate to results in people.

Personally, I also can't imagine being the mother who signed up for this. I try not to be judgmental of other parents, but this gives me the creeps.

While, in theory, it is technology that could rid the world of a whole host of genetic diseases....

It's such a slippery slope...we don't know the long-term effects of these modifications. It has the potential to be used for the creation of "designer babies". In case you want a blond-haired, blue-eyed little girl.

I wonder if the same people who buy non-GMO popcorn and such would be okay with a genetically modified baby?

It could do alot of good, and has the potential to do alot of harm in inadvertent side effects in the genetically modified. This is really the same issue science faces over and over. Good intentions don't always lead to good results when there is no way to know all the consequences without trying it.

Are designer babies a bad thing is a whole debate in and of itself. Personally, can't say I think they are as long as all comes out well. But, I also eat GMO popcorn, so there is that

But what about the greater good? It's the "gotta break a few eggs it you want to make a cake" cliche, right? If a few/several/lots of test kids have to fail in order to produce generations of people that are immune to cancer, epilepsy, Parkinson's, Alzheimer's, etc... is it worth it?

Mostly playing devil's advocate here...

Not sure what you mean by is it worth it? Is it worth it to keep a disease alive to create immunity? This is not where evidence would lead one. The risk with many of our current solutions is that it breeds improved resistance - e.g. antibiotics. Genetic manipulation is potentially the key to immunity and immortality if we can resolve the telomere problem. The problem then becomes one of resources and this will be pushed to the forefront.

From a genetic perspective it's diversity that keeps a population alive. Human nature rejects diversity and strives for likeness.

But what about the greater good? It's the "gotta break a few eggs it you want to make a cake" cliche, right? If a few/several/lots of test kids have to fail in order to produce generations of people that are immune to cancer, epilepsy, Parkinson's, Alzheimer's, etc... is it worth it?

Mostly playing devil's advocate here...

I realize you're playing devil's advocate, but this is the exact kind of reasoning that would lead us experimenting on humans who don't consent. I mean, if a few people have to "fail" in order to cure cancer, that too would be a "greater good."

At least as of right now, there is a generally shared consensus that it doesn't matter how many people it may eventually benefit -- using humans for research purposes is wrong (without their informed consent).

These girls didn't get a chance to provide it. They were betrayed by the two people who -- arguably -- have more of an obligation to protect them and their interests than any other people on earth. It's hard to think of this without emotions getting involved (for me, anyway). The very nature of who they are was changed, by technology that we still don't have a great grasp on (in terms on controlling the impact and scope of the genetic changes), and it was done for such a relatively trivial reason. The ability to contract HIV isn't a death sentence, it's something many people on earth share. Many of us manage it by reducing our risk factors for exposure, people who have a higher risk of exposure can choose to take preventative drugs. Even for those of us who are exposed and become HIV Positive, it's not an automatic death sentence. People can have quite good long term outcomes.

But what about the greater good? It's the "gotta break a few eggs it you want to make a cake" cliche, right? If a few/several/lots of test kids have to fail in order to produce generations of people that are immune to cancer, epilepsy, Parkinson's, Alzheimer's, etc... is it worth it?

Mostly playing devil's advocate here...

Not sure what you mean by is it worth it? Is it worth it to keep a disease alive to create immunity? This is not where evidence would lead one. The risk with many of our current solutions is that it breeds improved resistance - e.g. antibiotics. Genetic manipulation is potentially the key to immunity and immortality if we can resolve the telomere problem. The problem then becomes one of resources and this will be pushed to the forefront.

From a genetic perspective it's diversity that keeps a population alive. Human nature rejects diversity and strives for likeness.

In this particular case though, the removal of a gene is protecting from a virus. Viruses mutate much more frequently than humans, its likely to be a losing race if we keep trying to genetically modify to protect against viruses. Telomeres may solve aging, but provides no antiviral protection.

Interestingly, the scientist who ran this experiment has not yet made public how he chose his subjects and how much these people actually understood what they were doing. It's unfortunately quite possible they didn't. And he was strongly urged by peers not to do it, as if it goes wrong it could set back support for the whole niche in the court of public opinion.

In my mind, the ethics of what he says he's done are impossible to overcome, because you are experimenting on someone who cannot agree or decline. The babies and their possible offspring will pay the price if there are negative consequences. It sounds to me like the consensus is that the process has not been vetted enough in the lab to be moved to human trial yet.

Even if it gets to the point where it is deemed safe, it still has such a profound possibility of being misused, it's hard for me to think past that. Perhaps that's what most people worry whenever we move in such a new scientific/medical direction though. I'm sure that was the fear with test tube babies and IVF as well.

Interestingly, the scientist who ran this experiment has not yet made public how he chose his subjects and how much these people actually understood what they were doing. It's unfortunately quite possible they didn't. And he was strongly urged by peers not to do it, as if it goes wrong it could set back support for the whole niche in the court of public opinion.

In my mind, the ethics of what he says he's done are impossible to overcome, because you are experimenting on someone who cannot agree or decline. The babies and their possible offspring will pay the price if there are negative consequences. It sounds to me like the consensus is that the process has not been vetted enough in the lab to be moved to human trial yet.

Even if it gets to the point where it is deemed safe, it still has such a profound possibility of being misused, it's hard for me to think past that. Perhaps that's what most people worry whenever we move in such a new scientific/medical direction though. I'm sure that was the fear with test tube babies and IVF as well.

It is generally medically accepted that parents choose for children until they are old enough to understand and be autonomous (parent get to choose to vaccinate or not, circumcise or not,.....). Its difficult because there are things (arguably) necessary that need to be done before a child is old enough to make an informed decision.

It seems like the real line gets drawn in reacting to what is (most people aren't going to argue with a parent seeking treatment for an existing condition in their child) and what could be (vaccines anyone?).

Interestingly, the scientist who ran this experiment has not yet made public how he chose his subjects and how much these people actually understood what they were doing. It's unfortunately quite possible they didn't. And he was strongly urged by peers not to do it, as if it goes wrong it could set back support for the whole niche in the court of public opinion.

In my mind, the ethics of what he says he's done are impossible to overcome, because you are experimenting on someone who cannot agree or decline. The babies and their possible offspring will pay the price if there are negative consequences. It sounds to me like the consensus is that the process has not been vetted enough in the lab to be moved to human trial yet.

Even if it gets to the point where it is deemed safe, it still has such a profound possibility of being misused, it's hard for me to think past that. Perhaps that's what most people worry whenever we move in such a new scientific/medical direction though. I'm sure that was the fear with test tube babies and IVF as well.

It is generally medically accepted that parents choose for children until they are old enough to understand and be autonomous (parent get to choose to vaccinate or not, circumcise or not,.....). Its difficult because there are things (arguably) necessary that need to be done before a child is old enough to make an informed decision.

It seems like the real line gets drawn in reacting to what is (most people aren't going to argue with a parent seeking treatment for an existing condition in their child) and what could be (vaccines anyone?).

True, thanks for adding that. IMHO parents choosing between different medical options makes sense, at least when it only affects their children (ie not vaccines ). Parents choosing to allow their babies to be used in an experiment for an as yet unapproved treatment is different. But that's just me, at least. Regardless, I think that makes it even more important that he prove the parents were adequately educated on the risks and other options and understood.

I don't believe he actually did what he said he did. As far as I've read nobody's actually validated his claims so until they do I'm calling #fakenews.

ETA: targeting HIV positive parents is a weird choice as well. My understanding is that HIV positive folks can use prophylactic drugs to have unprotected sex without transmitting the virus and they are very effective. Is this not an option for conceiving couples for some reason?

But what about the greater good? It's the "gotta break a few eggs it you want to make a cake" cliche, right? If a few/several/lots of test kids have to fail in order to produce generations of people that are immune to cancer, epilepsy, Parkinson's, Alzheimer's, etc... is it worth it?

Mostly playing devil's advocate here...

I realize you're playing devil's advocate, but this is the exact kind of reasoning that would lead us experimenting on humans who don't consent. I mean, if a few people have to "fail" in order to cure cancer, that too would be a "greater good."

At least as of right now, there is a generally shared consensus that it doesn't matter how many people it may eventually benefit -- using humans for research purposes is wrong (without their informed consent).

These girls didn't get a chance to provide it. They were betrayed by the two people who -- arguably -- have more of an obligation to protect them and their interests than any other people on earth. It's hard to think of this without emotions getting involved (for me, anyway). The very nature of who they are was changed, by technology that we still don't have a great grasp on (in terms on controlling the impact and scope of the genetic changes), and it was done for such a relatively trivial reason. The ability to contract HIV isn't a death sentence, it's something many people on earth share. Many of us manage it by reducing our risk factors for exposure, people who have a higher risk of exposure can choose to take preventative drugs. Even for those of us who are exposed and become HIV Positive, it's not an automatic death sentence. People can have quite good long term outcomes.

Thank you for the response. I always appreciate your posts and how you handle yourself in debates (even when there is nothing to debate, lol).

Let me start by saying I have no background in science. I never even played a scientist on TV. But I do like, no... love to think differently and to push how I think/view/judge things. That's why I love this forum, but also why I sometimes get in over my head here. I tend to be a little more philosophical than scientific...

OK, so with that out of the way...

We make decisions for those who can't consent all the time. We weigh the risks vs the benefits and make decisions we think are in their best interest. The obvious differences (obvious to me, at least) here are (1) the risks and rewards are far less certain, and (2) we aren't making decisions in the best interest of the individual, but rather future individuals, hopefully for society as a whole. So ultimately, it's a moral question, not a scientific question, right? Where do you draw the line for your family? Sure, there are societal ethics and laws in place that come into the conversation (I assume this is what you mean by a generally shared consensus), but those are somewhat arbitrary and subject to change over time, right?

I'm thinking about it a bit more conceptually. If there were significant and substantial indications that human testing could lead to immunity of certain diseases, would that human testing be worth it? Clearly there are a lot of details that would need to be filled in to have that conversation (IMO, maybe it's just a blanket "no" for some, which is fine)... but for me, there is a conversation to be had there.

I also think the point someone brought up about disease/virus mutation plays a very significant role in all of this, too.